Friday, November 30, 2012

Sleep Study, Rett Syndrome and my girl

This week we had another sleep study for Abby. Since her Rett Episodes of tremors and jerks almost always happen as she is awakening we need to find out what is going on. Or at least the doctors do. Personally I think it is all Rett Syndrome and kind of it is what it is. Sleep disturbances come with Rett Syndrome but Abby's can be pretty rough.
This is my pretty girl while we were waiting to be admitted. She loves the hospital. Little weirdo.
Love this face. She looks like,"Say what?" She has Disney Princess eyes. Just adore her
Being hooked up to wires,straps,transmitters,EKG's and she's having a good time
  
Seriously? Hour later and she is still happy with tape and glue all over her head and face


                                         Oh Look a gauze hat and wire pony tail. Still having a ball


      A wire down between her eyes and taped down and into her nose. Is she complaining? Nope


OK seriously now. Tubes up her nose and running into her mouth and she's giving me the cheesey face. I have the best kid in the entire world

It took a while for her to fall asleep. More because she wasn't in her own room I think but shorter than at home where she can roam and play in her padded bed. I think her sleep was pretty normal for her. They tested how many times she wakes. Whether or not she stops breathing. Leg movements. Heart rates and o2 levels.

I did not sleep at all. I am pretty sure I was just starting to drift when they came in with their wakey wakey routine.

The tech said it would take up to 6 weeks to get results and suggestions but she was pretty sure Abby has Restless Leg Syndrome and that is what keeps her awake. I immediately asked if her leg sensors went off pretty hard 4 times and she woke up. They couldn't fathom how I knew that. They had come in 4 times shining lights on her or messing with wires. 4 wakes, 4 startles, 4 tremors. Rett Syndrome. Nonetheless I had to take her to the lab to get poked for iron levels.

Hoping someone that knows Abby or anything about Rett Syndrome is the one who reads the report. I hate to think of putting her on another med that will make no difference for something that can't be fixed. Not fair to her. She cant be medicated better. Not for some things.

I blame her father for her up all night routine. I'm pretty sure he's part vampire.

I will keep you updated!

Terri




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